CRPS and My Virtual World

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6 years 6 months ago #20086 by Liv123
Replied by Liv123 on topic CRPS and My Virtual World
Hi Josie, thanks for your reply, I'll try and answer your question re Ketamine inf. My infusions in incremented upwards by 0.25mg/hr up to a maximum of 4mgs/hr. It takes roughly 4 days (all going well) to reach the max of 4mg/hr- once there they hold it there for 3-4 days, then they turn it off. I'm confident you understand the reasoning behind ketamine infusions. My first was quite successfully in that it reduced my pain dramatically and increased the movement in the affected leg. The second and third infusions did not help enough to outweigh the significant negative side effects. I doubt I will have another. I will cover where I'm at with my stim in my reply to Don:) thanks again for your reply and support:) Liv :)

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6 years 6 months ago #20087 by Josie
Replied by Josie on topic CRPS and My Virtual World
Thanks Liv, I understand the approach, 4 mg per hour sounds like it could have some strong side effects Thanks for your reply, I will find your other post. Mine must have been 25 an hour, not sure where i got the zero from- blame the drug, I usually don't have an excuse for being a bit vague!
Josie
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6 years 6 months ago #20088 by Liv123
Replied by Liv123 on topic CRPS and My Virtual World
Hi Don:) thanks for your reply! I will go into more detail re my stim programming. I've been very supported since my stim was implanted. I probably saw my programmer once a week for the first month, then each fortnight for the next couple of months& then each 3-4wks since then. I have varying programs and have room to move within these programs. Each time a program altered I get good relief for 24hrs or so- & then my brain 'cracks the code' so to speak & the pain breaks through. Unfortunately my L4 lead fractured, which leaves me with my L3 lead- which luckily is the most effective. So running on one lead now. I certainly agree with your strategy of cooking& growing what you can from scratch- it's the only way to go I think. I no longer have the time or energy to have the garden I once did, but I do cook with good food from scratch almost ways. Thanks again for your support, Liv:)

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6 years 6 months ago #20090 by Liv123
Replied by Liv123 on topic CRPS and My Virtual World
Hi Josie- I feel a bit vague all the time now- always writing lists and double checking things- makes me feel old... Never mind:)

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6 years 6 months ago #20091 by grappers
Replied by grappers on topic CRPS and My Virtual World
Hi Liv123,
What a bit of bad luck having one lead fracturing, have they given any inclination of replacing that lead, or is that a long term goal, my two leads are positioned that both are needed to cover my pain areas, so if one went down that would be a big set back pain wise, it may also be the reason why your body is adapting so quick. Mine have never given me full pain control at most it has reduced it by 30% and that is on a very good day, I rely heavily on pacing and distraction as a way of keeping pain at bay, I realise that can be very hard looking after children so I admire your strength, looking after the veggie garden is my wifes baby, I just pot seeds in seedling containers at table height, it has been a role reversal in our household, I do all the light work and my wife controls the rest, it took a lot of adjusting and guilt feelings in doing this, as heavy jobs are the mans role.

Don

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6 years 6 months ago #20093 by Johnno
Replied by Johnno on topic CRPS and My Virtual World
Hi Josie,

Until my medication was balanced in my body to what was needed I was shaky , forgetful ,vague , tired to exhaustion I was falling asleep at work sometimes when I was driving I had to pull over for a sleep .
I was extremely frustrated especially if someone questioned my calculations or any thing that was to do with my job but I worked through it I am extremely lucky to have found a fabulous psychologist , physio and boss .
All I can say is stick with it there will be a light albeit a long way away but there is a light.
Johnno

as long as I wake up alive I'm happy
Because it could be worse

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